A load of ten-pound weights

[The word on the street is that it's very difficult or near impossible to comment on this blog. If you've been frustrated or cursing at your phone, I'm sorry about that. (For what it's worth, I think you can only comment from a computer? Not from a phone?) Anyway...]

Cora had a so-so day today. One of the things that's complicating her condition is that she has developed heart block, which basically means that for every beat her heart is trying to generate, only about half are actually being conducted. A dangerous condition for anyone, but especially someone who already has a terrible squeeze of her heart. (If you can't squeeze a lot of blood on each beat, you need a lot of beats to compensate.) In addition to just blocking, her heart also does what I call "tricks." Crazy arrhythmias, weird patterns and, in general, things that are scary. Because no one really understands the cause of her heart block, and because it keeps changing patterns, people worry. I worry.

I live with the worry that Cora's heart will just stop. 

Last night I was sitting on the couch ready to settle into some mind-numbing Top Chef when I got a message from Jay that Cora had presented a new pattern. They were doing a gas (which is when they draw labs to measure her blood gases) and taking an EKG to learn more. No matter how many times we've seen Cora do something worrisome that required further looking into, no matter how many times some drama necessitated a good ten medical practitioners to gather around her bedside, it still sinks my gut. 

You see, there is this hole in my gut. I got it the night Cora was born and they took her to the NICU. The room had the eerily quiet sound of all our euphoria falling flat on its face. No crying baby, nothing to say. That kind of let down made a hole in me. Some days and some moments, it's small, just quietly being there. But then there are those moments when the spooky stuff happens, and the hole gets bigger and heavier. Each time that happens it eats another ten-pound weight. And most of the time it amazes me that I can hoist myself to stand up with all those weights living in there.

That's what it feels like a lot of the time. But this girl has an amazing ability to go right to the edge, peer over and lose her balance, then right herself and come back. And Dom and Cosie and Jason unload those weights, just by being them, when the load gets too heavy.

Cora was okay for last night, and she has been okay-ish today. Everything I fear is what could have happened had she slipped off that edge, or what might happen later if she does.

For tonight, Jay is there with her and I am with the kids, and everyone is safe. In fact Jay just sent me a picture of Cora oogling at one of our friends who is there holding her. Cora has a big smile on her face. I'm sure our friend has an even bigger one. She is making everyone feel better, mostly me, even now, as she always does.